You CAN do this (73/100)
Today I read a post to r/diabetes by a newly-diagnosed 13-year-old. They talked about their suicidal thoughts, always feeling worn down and a burden to their family, and not knowing what to do. They talked about how often people misunderstood “diabetes” as “type-2 diabetes” and made snide remarks. Their blood sugar readings were erratic and they felt like they needed an adjustment but their doctor didn’t make the change. Reading this young person’s comments reminded me of how ill-equipped medical professionals are in taking care of type-1 diabetics and the need for more education and resources for the newly diagnosed. Those recently diagnosed are, in my opinion and others who I’ve talked with, some of the most at risk of depression, anxiety, fear and suicide.
Type-1 diabetes is an incurable disease. This isn’t up for debate — no matter how many times I read articles about a cure (go do a search for “type-1 diabetes cure” and sift through article after article of bs, often with titles like “They found the cure!”). However, after being diagnosed, the people around you feel like the best way to help is to go to Google and send you these articles. The intention is appreciated but hearing that there’s a cure “right around the corner” fills the newly-diagnosed with a false sense.
They now have diabetes. It’s a disease of constant management, compartmentalization and self-awareness. All the news stories in the world will only serve as a distraction from what they need to focus on, the thing that must become rhythmic and automatic: taking care of this new disease.
Type-1 diabetes is like any other life-threatening auto-immune disease with the exception that the food we eat, if we eat too many carbs or too few, can potentially land us in the hospital. It’s a surprise disease.
Example: you go out to eat somewhere unfamiliar, pick something appealing off the menu, make a guess about the carb count (I often err on the side of a lower amount of insulin because it’s easier to correct when your blood sugar is high than try and find something to eat when you go low and are disoriented), deliver your insulin, eat, land in the hospital because you guessed wrong. SURPRISE! The sushi you were eating was low-carb but the menu didn’t mention that. That ambulance ride is going to be expensive.
And therein lies the concern. If I land in the hospital from eating something I’m not familiar with, I’ll only eat what I know becomes a common refrain. I don’t want to be a burden on my friends and family, so I’ll just stay at home where I’m safe is where your brain goes. I’ll never leave the house again because I’m scared to death of what might happen. This seems like hyperbole. It’s not. It’s common. I still have these thoughts and I was diagnosed over 10 years ago. And with these thoughts, the disassociation leads to depression. And without diagnosed depression and help from a therapist, the likelihood of suicidal thoughts increases exponentially.
When I get a new endocrinologist (doctor that deals with the endocrine system, and therefore diabetes) I’m often asked the same questions: “Are you familiar with carb counting?” or “How often do you check your blood sugar?” These questions are fine but they ignore the real problem, the dread. Because you can carb count like crazy and still have hypoglycemic (low blood sugar) reading on your tester, because no one tells you that sex can increase your blood sugar readings (sometimes more than you’d expect) or drop them depending on you. Maybe a more reasonable start is “have you talked with a professional about your diabetes? Someone who understands.”
I have a feeling that if that’s where you start, you might get some push back but very quickly the type-1 diabetic will recognize that you, as a doctor, can admit that you can only deal with what you know. They’ll want an advocate and someone to talk to. Because having someone who understands where you’re coming from, who gets the common feelings of failure, can go a long way.
Type-1 diabetes is a disease of trial and error, of surprise and disappointment. It’s a disease where doctors often have no idea how to deal with their patients, which can lead to some huge problems. But more importantly, diabetes is a disease that, because of misinformation and miss-characterization, often leads to feeling alone, disassociated and depressed. Again, I feel like I can’t say this enough, it is a disease without a cure or a known cause. It is the most misunderstood disease.
We need doctors who understand that the numbers aren’t going to be perfect and remind their patients that this is okay. It’s not failure. You’re learning about your new disease and body in ways that few others have to. We need doctors who explain the importance of taking time to care for yourself. Because people will not understand what’s going on with you. You might need surgery and the surgeon might have no idea how type-1 diabetes will affect you. I had this happen recently. I had to check to see if the surgeon contacted my endocrinologist once a day until I went under to make sure he understood how the surgery might affect me.
But the most important thing is you need to be okay taking care of you. You’re not alone. There are thousands like you going through similar difficulties. We learned to hear our bodies, discovered how we respond to pizza and other fatty foods, and decided which doctors “got it” and which needed to be replaced by more understanding doctors.
Type-1 diabetes is an incurable, surprise disease. It is horrible but something with attributes we the affected can understand and learn about and adjust to. It’s a disease that means a complete change in how we think about ourselves and what we eat. It’s a disease that much of the rest of the world will clump in with type-2 diabetes. It’s a disease that must be observed, by you and people you can trust and educate. It’s a disease that will lead to horrible thoughts and sadness and many times dark places. But you’re not alone in this. There are others who have been through what you’re going through.
I’m so happy that I finally started following r/diabetes because the conversations and people on there have reminded me, just like I’m hoping this reminds that 13-year-old, that this is a disease that can be managed. It’ll be difficult but you can’t give up.